I feel like I am not mothering, but just doing kid damage control. And life damage control.

Exactly. I feel like I'm just going through the motions. Today I am so tired, I feel like a robot. I have no enthusiasm to give DS1 and I hate to let him feel the stress I am under. He finally took his nap and I thought Oh - I can put the baby down and get some sleep. Right on cue, DS2 starts crying that reflux cry. Had to walk him around for three hours (11:30am - 3pm) and then he finally fell asleep. Ever feel like you're doing something wrong. All the other mothers know how to take care of a child, but you don't?

DH says it could be that he is detoxing from the mold environment. I hope that is the case.

Most days, I don't eat until DH gets home. Between feeding the two of them, washing bottles, changing diapers, trying to find activities to keep DS1 stimulated, etc... I don't have much time for myself. Today I put the baby down and decided to just let him cry for 15 minutes while I cook something. He cried for 30 seconds and I couldn't do it. It's not his fault he can't lay down without feeling pain.

I really think if your LO is not at a decent baseline yet, that you should keep trying things.

Yes, I agree completely. I'm going to keep trying until we find a way. DH and I have been bantering back and forth about using the medicine. Originally, I didn't want to try it because we tried it on DS1 and it did nothing. Also, his symptoms increased and later on we figured out he has a corn allergy (corn is in Zantac as well as most other medications). I have allergies as well, so most likely DS2 will. I still am considering it, but DH doesn't want to go that route. If the medication helps him and he can breastfeed again, that would be most beneficial to all of us.

I just want to be able to love my children with the best me possible. And right now, I'm not doing that. Definitely not the best me, and definitely don't feel the love around here.

It's good to have other mothers who have gone through the same or worse. It's so true that people don't understand when they haven't been through it. My family thinks I'm crazy for abandoning my house and moving into an apartment. I've also heard from some of them that I'm too overprotective and I should just let him cry, not pick him up and walk him around. Stop trying to help him. I'm creating the problem by responding to the cries. He will eventually stop crying. I've heard it all. I'm so sick of it and so sick of not getting the support from them.

Sorry about the rant. Your LO is 18 months and still having problems? You must be exhausted! I hope things get better for you as well. I think one day we will look back on this time with fondness, and be able to pick out little moments that made us smile. At least that's what I hope!

I am glad you guys got the apartment but sad that it isn't helping as much as you hoped it would. I can't remember if you mentioned this or not, but my son has reflux, particularly at night, and his gastro recommended that we elevate the head of the bead. Is this possible for your DS? Or could he even sleep in a swing where he would be mostly sitting?

I hope you find some relief soon. Having just one high needs child is difficult, but when you have two and one of them is a baby, that ups the stakes significantly. Try not to be too hard on yourself. AP is great in theory and it's something that we could always aim for, but sometimes it's just not practical and reality takes over. (((((HUGS))))

Hi, yes we have him sleeping in a Fisher Price rocker type thing. It is elevated. He now won't sleep in anything else (not even our family bed)

Also, when he has the reflux it is bad in any position, not just when he lies down. So he is basically crying as we walk him around, but likes the motion and usually starts screaming when we stop moving or put him down. So I'm basically being forced to walk miles a day.. what a workout!!

So glad we are in the apartment too. I have so many allergies and the mold was making them worse. I feel so much better, and DS1 isn't coughing all night. So at least it helped us some!

Thanks for the hugs!

Quote:

Originally Posted by wytchywoman

I am glad you guys got the apartment but sad that it isn't helping as much as you hoped it would. I can't remember if you mentioned this or not, but my son has reflux, particularly at night, and his gastro recommended that we elevate the head of the bead. Is this possible for your DS? Or could he even sleep in a swing where he would be mostly sitting?

I hope you find some relief soon. Having just one high needs child is difficult, but when you have two and one of them is a baby, that ups the stakes significantly. Try not to be too hard on yourself. AP is great in theory and it's something that we could always aim for, but sometimes it's just not practical and reality takes over. (((((HUGS))))

It might be pointless to keep updating this thread, but I have to do it for my sense of control over the situation. I also like to come back here and read everything I've gone through when I'm down about things.

DS is 4 months old now, so he's been on formula for 2.5 months. I still pump every day, in the hopes that he will grow out of whatever is causing his pain and reflux when he drinks breastmilk.

I finally tried the Zantac, and true to my intuition it made him *much* worse. A screaming I have never heard before worse. So, back to the drawing board. I guess most at this point would be wise enough to say - it's just not working - and move on. But I can't let go. I just feel like maybe, maybe - at some point he will be able to tolerate it. And I don't want to let that go.

He's not even 100% better on the formula. He still needs the DGL to help soothe his throat. And he still has bad days/nights. And we still have to hold him for 30 minutes after each feeding and basically walk on eggshells all day and all night -*every* day- , to keep him from having a reflux episode. But, hey at least something is helping take the edge off for him.

We have an appointment with the GI doctor tomorrow. I'm not sure what to do about running tests and getting prescriptions. Conventional medicine always has allergens in it. DS1 and myself usually have problems taking it. If they do invasive tests and then prescribe him something that he can't even take, what's the point? I guess the best thing that could happen would be for the Dr. to offer a prescription for the elemental formula that seems to work on reflux/GERD babies. We sure can not afford it by ourselves.

Anyway, on to some good news. DH and I decided to try giving a little breastmilk (about 1/4 oz.) mixed into one bottle of formula per day. We did it for 2 days already and DS doesn't seem to be any worse or better. Not being worse means maybe we can increase it daily. But reflux is a funny thing, so we are treading carefully.

If anyone is reading this, thank you for taking an interest. This feels like such a lonely road, especially for a highly sensitive person. Sitting here day after day, sleep deprived, messy house, pj's, whole world passing me by, all-time consuming crying baby, 3 year old babysat by Netflix attention deprived. Mommy guilt, depression, frustration, wondering what I'm doing wrong, why other people have *normal* babies. Not what I envisioned when I looked at the pregnancy test and went running upstairs to tell DH! But also, I know it could be worse and I have to remind myself that I am blessed to have such trivial problems when compared to others.

Hang in there, momma. That baby will get bigger and you will be able to start trying other foods.

My youngest brother was allergic to everything as a baby. He drank sugar water and ate rice cereal because he couldn't take milk or soy or formula. This seems like forever, but the baby will grow past it.

I'm sorry that things don't seem to be improving much. I hope at some point that it becomes easier for you. As for the medical testing, if it were my kid (which it isn't so you have every right to tell me to shove off) I would pursue an endoscopy at some point to rule out food allergies. I don't think it is something that needs to be done now, 4 months old is really young to undergo general anesthesia and I wouldn't push that unless one of my kids was deathly sick. I do think though that he should be tested for EE, just to be safe, and to see what if anything he will react to as he starts eating solids. I work with special needs students and one of them has EE. He is allergic to the usual (dairy, wheat, soy) but he also has some strange allergies, like chicken, which most people can tolerate fairly well. So it could be that your son is highly allergic to some oddball food that you are eating and passing on to him in your breast milk and you aren't necessarily recognizing it because it isn't a common allergen. FWIW, that student I have is able to tolerate solid foods and he does not have a g-tube, so EE is not automatically a sentence to a life time of tube feeding. He has a restricted diet but fortunately he really likes fruits and veggies and turkey so he does okay. I'll keep you and your son and your family in my prayers.

I followed DeCHiRi's story when I was pregnant and then with my youngest when she was very similar. I have 6 children and the older five all added together in their whole lives as much as our youngest did in a week. She would scream ( the baby goat bleating scream) for hours.... averaging 6 hours a day. She got up to 14 on bad days, only lapsing into unconciousness for a few minutes between screaming tirades. I was a zombie.... I could not function at all. She had a lip tie when she was born and it was severe, we ended up getting it revised at 10 days old.... it improved her latch enough that I didn't lose my nipples but she didn't nurse well at all. The ENT mentioned that her tongue was weird but that everything looked fine. At five months I met a mother at our homeschooling group who mentioned that her children had all had posterior ties and they had the same problems.... I researched and found that it looked just like my dd's tongue. I found a ped who would clip it in the office with topical anasthesia......we drove out and had it done. (the night before the procedure she screamed so hard she blew all the vessels in one of her eyes) when the nurses apologized for her crying during the procedure I showed them her eye and said that it was less screaming than she had done on the drive over.

It was a miracle.... our dd was transformed, she slept and didn't cry for a week. We lived with a completely different baby..... we were overjoyed that she was not crying but so sad that we had missed it for so long. After a week she started being fussy again in increments.... it was much better than before but she was still a screamer and a choker. She drooled incessently. It was hard to really accept, we kept saying that she must be teething,(even though our older kids hadn't gotten teeth until they were one.) We kept thinking it was an allergy ( our 6yo has crazy allergies and we eliminated all of them... no change). We tried gluten free, my arthritis disappeared, my stomach issues disappeared. She was still miserable. The pediatrician who had clipped her tie had mentioned that sometimes ties were so deep in the muscle tissue that he couldn't clip them out patient.....he suggested that if we still had problems to go to a pediatric dentist in NY to have the tie lasered. We debated whether we thought that it was the tie but eventually decided it was worth going.

We drove up to NY and had her examined.... Dr Kotlow was spectacular.... he explained that the tie was causing all of her screaming issues because it was causing her reflux and her inability to protect her throat. We were sure that what we were dealing with was going to be resolved with the laser..... it was! The Dr said that he tool her tie back 1/2 an inch.... that is huge but it was what she needed. She was able to stick her tongue out so much further than before........she could nurse without me holding her on. She could manage the milk without choking. She did take quite awhile to figure out the new mechanics of nursing but it was so different. She still cannot manage a bottle or cup, it is because of her vestibular issues not her tongue... she cannot tip her head back without falling. She can now eat without choking on every bite of food. SHe does still have a sensitive gag reflex but it is maybe once a meal not every single bite of food.

I was so sure that there was an allergy causing all of the issues....we had been through 3 years of battle with our son and i have dealt with allergies and the horrible side effects my while life, I hadn't thought that her tongue tie could affect every aspect of her life so much. I can say that we still have a very high needs little girl..... we have other issues to deal with on a daily basis,...but she is not suffering every moment. I am so thankful that we did go to have the consult with the Dr and see if it could be her tongue. We are still having issues with her speech ( she only has one word) but it is definitely worlds better than it was 6 months ago. I was so depressed and barely able to function. I felt as if I was drowning every day with no way out. I cannot believe that I survived that time, no sleep, no breaks, no ability to think clearly. I think now that if I had been able to think clearly I would have seen the reality of my situation and found help faster but I was just too far gone with exhaustion.

I don't know if this will help you, I am so sorry that you are dealing with this now and that you and your family are living with this.... I can remember how desperate we were when our dd was screaming endlessly. I just know that if someone had mentioned this to me I would have been saved so much grief and my dd would have been helped faster. I hope you find answers soon, sending hugs to you!!!!

I have a kiddo with EE, and I definitely think that going to a GI is the way to go. They WILL likely suggest an PPI (like prevacid) and then an endoscope. An elemental diet may be warranted (it sure sounds like it!)

The bad news is that a lot of insurances do not cover formula except for inborn errors of metabolism. Some cover formula for infants for the first year, so I hope that will be the case. Our kiddo just had to go 100% formula at age 5 so I understand the sadness and hardness that it can be.

Big hugs. This has been quite a journey for you and I have been thinking about you.

Thanks everyone. I read all your posts, but only have a minute right now to respond. Went to the GI last night and she was no help at all, besides telling me that he will outgrow it in a few months and he looks healthy because hes not underweight or malnourished.

I have another appointment in 2 weeks with the same doctor. I am looking for a new doctor.

Keep posting...I have some goofy long thread here from my DD3s first year and I swear just being able to spew it somewhere helped. And having a few people that stuck with me here the whole time was great. Some good advice from the mamas here. When #3 was born, I was so anti dr, anti anything medical on my kids, the ones so far had BF for years, etc. Now I have a 19 month old that has undergone general anesthesia 5x for endoscopies and a 4 yr old that has been under 3x in the last year, and I can honestly say all were needed. In hindsight, and I think I said this in my PM, but I would rather have scoped DD3 at 4 months, prior to going elemental, and gotten a better grip on the diagnosis (either EE or not) vs listening to a horrid GI that then started pumping my child full of what ended up being 12 different medications that did not work (and I was so desperate at that point, I would have put her on a morphine drip to freaking make it stop). I think I did way more damage with all the meds vs a scope that took light general anesthesia and took 10 minutes. Even now, when she gets scoped, she is awake and literally climbing the walls an hour later. My 4 yr old has not missed a beat either. Her first scope was her diagnostic one for EE, and she was 3 and all she remembers is that she got a cool coloring book.

Not saying knock your LO out without thinking twice, but just trying to look back on my experience which is freakishly like yours, and wishing I had pulled the trigger on certain things earlier. I ended up so beaten and tired that I could not even think straight to make rational decisions at that point. And still to some extent am. :)

I am with Devon, and I think it SUCKS that your GI gave you another H2 blocker vs a PPI. Just know that you are NOT crazy. One thing I realized after moving my kids' care to a GI that deals specifically with EGIDs, is how important it is to trust my instincts. When we speak on the phone about a food trial, or weird new onset of symptoms that I am trying to sort out, the first thing he asks is..."what does your gut tell you?".....then offers he medical expertise based on that.

Hang in there, be on the look for another GI, take the stupid H2 blocker so you can call back and tell her it does not work, and get on a PPI so one way or the other there is a next step.

You will probably NOT look back on this time with fondness (I sure don't look back with fondness on the screaming pre-treatment days or the feeding tube days or the disagreements with the feeding team days), but you WILL survive this time and come out the other end of it. You will some day (soon!) be able to sleep. And breath. And relax. You will make it through this.

I keep thinking about you and your 2 children that become ill, can't digest, whatever you want to call it from breastmilk and what could be going on. According to the American Academy of Pediatrics Breastfeeding and the Use of Human Milk only babies with classic galactosemia are contraindicated for breastfeeding - "Breastfeeding is contraindicated in infants with classic galactosemia (galactose 1-phosphate uridyltransferase deficiency)."

It just doesn't make sense that your baby would do better on formula. I am concerned that your children have a rare genetic disease. It isn't classic galactosemia. Babies are tested in all 50 states. Of course tests aren't perfect but babies that don't get diagnosed with classic galactosemia usually die in the first 2 weeks. It's not unusual for children with rare diseases to go undiagnosed for years. My 3 children have a rare, life-threatening genetic disease. I have an adult-onset form of the disease and was diagnosed when I was 32, soon after the birth of my youngest child. They did testing on my 3 children and they all have the same disease. My children were 8, 5, and newborn. The doctors could never figure out what was wrong with them until I was diagnosed. My 2 nephews and grandson also have the disease and they would have never been tested. This is a very rare disease. Much rarer than galactosemia.

If you look at the comparison lists of formula to human milk and explainations of why human milk is designed for babies how could formula be better for your baby? I encourage you to take your baby to an immunologist/allergist associated with a children's hospital. It doesn't make sense that this is just a digestive problem and a that a GI doctor would be the answer. Switching from breastmilk to formula isn't supposed to make digestive probems better, it would make them worse. I'm not sure the allergist would be the best but they are used to working with people with rare disease presentations.

Someone said I didn't seem like I cared about your feelings. Maybe because I said your your baby had the right to be breastfed. I said this because you said the doctors were telling you to stop breastfeeding. I wasn't saying this about you and breastfeedin but about doctors and telling you that you can't. I am a health scientist and sometimes I come off sounding like Dr. Brennan on Bones. It was said I must not know what it is like to have a child with problems. I wish that were so. I had 3 very ill babies and children and they only had a 64% chance of living until 20. They are all adults. My grandson is 3 and has been head to toe eczema since he was 10 months. I didn't know my children's risk of dying when they were young. It breaks my heart my grandson only has a little better than 50/50 chance of living to be an adult. I care very much, perhaps people assume the worst.

Thanks everyone who has commented. I finally have about 5 minutes to come on here and update. Hopefully the baby sleeps at least 5 minutes, but I never know nowadays.

Purplepaisleymama, thank you for your story. I had an appointment with a midwife/LC and she took a look at his mouth. She says he has an extremely sensitive gag reflex and that could possibly be a reason for all the problems. If he was feeding off of the breast, it goes way back into the mouth but the nipple of the bottle goes partially into the mouth. But that doesn't make sense as to why he *still* had problems when I was exclusively pumping. And as I mentioned before, he does noticeably better on the formula, but the reflux and crying is not totally gone.

Thank you for your sentiments Devon. An update: I went back to the GI doctor and she said she will not do a scope. She says it's probably colic or reflux and she doesn't want to put the baby in unneccessary possible harm by scoping. DS is gaining weight and *looks* healthy. She gave me Prilosec and Neocate (elemental formula). Seeing as my DS reacted to the Zantac, I don't feel comfortable giving him the Prilosec. I don't want to go down this road of medication after medication, so I am stalling I will try the elemental formula though and see how he does. Right now, he won't touch it. I am looking for a new GI on long island, New York if anyone has info it would be appreciated.

Although DS can not have much of my breastmilk without getting sick, I am still pumping 3 to 5 times a day. Call it hopeless, but I can't seem to let go of the possibility that once we find out what this is I may be able to breastfeed again. As of right now, he will not latch. I'm trying every day and he is getting closer to latching again. Sometimes I wonder if its pointless to be doing all of this- pumping for 2 hours a day when I could be spending time with my boys, staying up late to pump when I could be sleeping - but I have to hold on for him. I feel if I let go now, I will fall apart emotionally with the strain of my dashed hopes.

Foreverinbluejeans, thank you for your post. And I'm sorry for all you've had to go through with your little ones. So glad they are alive and doing well.

I'm sure it was meant to help, but you have a way of making me question my sanity in a time that is already rough and frought with insecurity. Like a bull in a china shop.

And of course, DeChRi - thanks for all of your help in this. I am plugging along albeit slowly. I guess I have to go through all the rigamaroll the doctors put you through before I can get a diagnosis.

And thanks for the dose of truth fiddlefern. I remember when DS1 was sick like this. I look back on those days with dread and anger. Not fondness. I want so badly to be able to enjoy this time. I think I deserve it. I ate properly when pregnant, had a beautiful peaceful homebirth, cared for my little one... I deserve to enjoy my child who has now just started screaming. He just slept 20 minutes after being up all night last night... lovely... got to run!

I am so sorry you are dealing with this. I know how hard it is to try and make decisions for your kid- always weighing the pros and the cons of the natural route vs. pharms. I do want to encourage your to try the Prilosec- it is a totally different class than the Zantac, and untreated reflux can have life long consequences (like increasing the risk of esophageal cancer), not to mention the immediate pain it causes.

I hope I am not being to forward. I have always been hesitant to put my kids on any kind of medication too,so I get where you are coming from.

Thanks homemademomma. No, you are not being too forward. I need some clarity right now - advice from someone who is outside the situation.

It would be wonderful to think that I could use a pill to solve everything. But that hasn't been my experience with medication. Just to clarify, my children and I don't handle foreign chemicals very well. I've been told by a ND that my children and I have "methylation" issues, causing *huge* digestive and allergy problems. Mine were worsened by being on PPI's and other meds. Meds have made my life miserable. I get terrible looking rashes all over my body and face from eating. Sometimes I get the rashes, reflux and stomach pain from eating things I'm not supposed to be allergic to. My list of allergies is growing every day and I can barely eat anything as it is. Last night, I reacted to chicken, which was one of the last meats I can eat. I don't want this for my child. Another downside is that Prilosec shuts off the proton pumps which cause acid in the stomach. Stomach acid is supposed to help keep infection and bacteria away. My child is not vaccinated, so I could be creating a nice environment for some kind of virus.

Just wanted to get my thoughts out on paper...

Thanks for helping me clear my mind actually. I am considering the medication, even through all of this. I think I will try the hypoallergenic formula first and then if that doesn't work, possibly the medication. Thank you so much for your advice, I really do appreciate any advice that will help me :)

I would also lean in trying the Prilosec - because it is a PPI. But, like you said, you have a history of problems with medications, so it's something to consider. Did you talk to the doctor about your past problems with them?

I would definitely switch to a different GI, or get a different opinion. Just saying "colic" or "reflux" is not acceptable, IMO. This is extreme and this poor kiddo is suffering, as are you!

My kiddo is on Neocate but it took him being on it 100% (with absolutely nothing else) before he started gaining weight, etc. I think using it is a good path to start from, and see if it helps. However, if you can't get the reflux under control, it might not (because its not going to prevent that). I would give it a try with ONLY the neocate - no other formula, milk, no drops added, etc. and see how it goes.

I don't think you are crazy for still pumping - I am majorly impressed with your dedication. When I thought I was going to have to potentially wean one of my kiddos early, it was devestating. Keep up your hard work and dedication but don't kill yourself about it if you decide that you do have to stop. You have been a warrior so far.

Hi Devon - yes I spoke to the GI about the problems. Well, more like I tried to talk to her. Some doctors don't understand. It's like talking to a brick wall.

For instance, when I mentioned we have corn allergies and that there is corn in the Zantac (which he could possibly react to), she responded "There's no corn in Zantac". But I had done my research already and (obviously) she was answering without really knowing. Typical response I get from people. I've learned not to argue, because it makes me look eccentric.

Unfortunately, most people, incuding doctors, don't understand the true nature of food allergies/sensitivities. Or problems detoxing chemicals. But when you live it day after day, and work so hard to protect your children, you can truly come to realize the intensity of the setback you will have to suffer *just* from trying to go about things the standard way. As I'm sure you understand, since your little ones have dealt with similar things.

His pediatrician is one doctor who understands much better and supports most of my decisions. She was the one who prescribed the Zantac in the first place, but would not prescribe Prilosec when the Zantac caused a terrible reaction. She wanted a GI visit first.

And yes, we are all suffering. We keep looking for answers. First it was the breastmilk, then the mold in our home (which we moved out of), then possibly the formula... among many, many other things. We have been trying to figure this out for 3 months now. I have to say, he is doing much better than he was 3 months ago. So we are slowly moving towards finding relief for all of us.

Thank you for your kind, supportive words. Gotta run to work now! Just started a new PT job at the HF store.

Well, DS is almost going to be 8 months. And what a frustrating and confusing time it has been for the family. Yesterday was the first day I didn't pump at all.

We still haven't found an answer, but he is (for some unknown reason) doing okay on the formula. He's doing okay enough that doctors have labeled it reflux or colic and don't want to go any further or do any other tests. Of course, we are planning on seeing new doctors and hopefully getting some tests done. But really - one main thing has happened to cause me to discontinue trying to give him breastmilk. I lost a part of my tooth with an amalgam filling. I don't know where it went. I could have swallowed it or maybe just lost it.

This was two teeth together with two huge amalgam fillings that we have suspected to have caused allergies and sensitivities in me ever since the day I got them 9 years ago. MY first DS was breastfed for 2.5 years and we have also wondered if the amalgam fillings were getting into the breastmilk somehow. We think he may be on the ASD spectrum.

Because I lost part of my tooth unexpectedly, the dentist had to do some extensive work on those two fillings last week. There was already a cavity underneath the fillings and they had to be removed at some point anyway. But I was planning on waiting until my little one turned 2. The dentist removed all the amalgam and replaced it with composite. I have decided that I don't want to take the risk of mercury somehow getting to DS. Some say it's okay to breastfeed after you pump and dump for 3 days. Others (some acquaintances mostly who have ASD children) say you should wait 18 months after doing any kind of work with amalgam. It's just not something I want to experiment with - and he wasn't exactly enjoying the breastmilk to begin with.

Part of me doesn't want to give up pumping, but I know that it takes *hours* of time away from my children. So I'm finally at peace with my decision.

I want to thank everyone on here for the encouragement and the non-judgemental advice I recieved on this thread.